Sometimes I want to neck punch these doctors.
Sometimes I am so happy to hear what they have to say I want to french kiss them.
Mostly, though, I feel so over them. Like that boyfriend in high school that you kind of found cute and maybe had great parents but pretty soon, his cuteness faded in your eyes and his mom turned out to be kinda pushy.
At any rate, Iris is in the PICU. We opted to move her from the NICU to the scenic 8th floor because they're used to dealing with the host of drugs she's on--morphine, anyone? with a chaser of methadone?--and getting her biscuits out the door.
As it is, though, homegirl isn't moving anywhere anytime quickly.
She's on a boatload of sedation drugs and hasn't been consistently alert since the weekend before her surgery, so about 3 weeks ago. And she's on the ventilator at fairly high settings. And she has pulmonary hypertension from the previous hole in her heart beating the bejesus out of her lungs (technical word "shunting"). And she's on increasing amounts of oxygen as they reduce her sedation and her lungs figure out that they've been pummelled and need to start working a bit harder. And we can't hold her until she's off the ventilator. And the resident that's been assigned to her is a complete doofus--I don't use that word lightly--and I'm pretty sure that I'm never going to talk to him about Iris' care that's how little faith I have in his ability to remember crap. And the attending doctor talked about the future need of a tracheotomy if it gets to be 4-6 weeks away from her surgery and she still needs pressure from the ventilator. And I can't even type that last sentence without feeling so discouraged by the future. And she's not going to be home for Mother's Day.
What's good? Well, she's got her own room and her own nurse. She's still alive. Her heart is healing. She's in town. She's pretty cute. We love her.
The top list is looking a bit longer and I want to cry. Crap, now I'm crying. I shouldn't have started this post.
But that's our story. We live so day to day here. Our good days are really really good and our bad days are really really bad. I feel bipolar and I'm not even getting the benefits of lithium.
Curses.
Friday, April 30
Thursday, April 29
Straight up now tell me**
I am fascinated by all that has happened to Sandra Bullock in the past few months and I want to think that it's less onlooker-salacious-gossip-sad,sad addiction-to-US Magazine and more about also being a married woman and also believing her husband to be a good man. For I cannot even fathom the pain and horror of finding out the contrary.
Side note: her baby, Louis?--as I told Sam--I want to spread him on toast he's so cute and nomnomnom.
Anyway, this leads me to a pact I used to have with my high school friends and discussed with a co-worker today: Do you tell a friend if they find out/witness that friend's significant other cheating? Would you want to know?
In high school, I was all "Sign me up. You see X even remotely looking over the moon with someone else and you TELL ME."
I feel the same way now, but I know it comes with lots of qualifying bits of information. Was the significant other merely having lunch with someone? Were they holding hands? Was his tongue down her throat? Were they just shopping? Because, although, I don't have sisters or even very many female cousins here in town--those could be easily confusing mishaps.
My bottomline is still "Sign me up." I wouldn't want to be a sucka.
Did you ever see that movie with Diane Lane and Richard Gere and that hot French guy? Hot French Guy and Diane Lane are heavily smooching in a restaurant when they're spotted by a co-worker of Richard Gere's (Diane Lane's husband). Co-worker is visibly shaken. Seeing that, knowing that--it's a burden. I have NO IDEA what I would do if a saw a significant other of a friend heavily smooching someone else other than my friend. Ugh x 12,000. And unless we'd made the pact, I would really waffle. Tell and risk being called an Interfering Douche? Sit on it and hope for the best? Tell and hope it goes over as well as can remotely be expected?
Again, ugh.
So...what do you want? What would you do? Is there an alternative I haven't thought of other than Interfering Douche?
**Oh, that's right. I quoted Paula Abdul.
Side note: her baby, Louis?--as I told Sam--I want to spread him on toast he's so cute and nomnomnom.
Anyway, this leads me to a pact I used to have with my high school friends and discussed with a co-worker today: Do you tell a friend if they find out/witness that friend's significant other cheating? Would you want to know?
In high school, I was all "Sign me up. You see X even remotely looking over the moon with someone else and you TELL ME."
I feel the same way now, but I know it comes with lots of qualifying bits of information. Was the significant other merely having lunch with someone? Were they holding hands? Was his tongue down her throat? Were they just shopping? Because, although, I don't have sisters or even very many female cousins here in town--those could be easily confusing mishaps.
My bottomline is still "Sign me up." I wouldn't want to be a sucka.
Did you ever see that movie with Diane Lane and Richard Gere and that hot French guy? Hot French Guy and Diane Lane are heavily smooching in a restaurant when they're spotted by a co-worker of Richard Gere's (Diane Lane's husband). Co-worker is visibly shaken. Seeing that, knowing that--it's a burden. I have NO IDEA what I would do if a saw a significant other of a friend heavily smooching someone else other than my friend. Ugh x 12,000. And unless we'd made the pact, I would really waffle. Tell and risk being called an Interfering Douche? Sit on it and hope for the best? Tell and hope it goes over as well as can remotely be expected?
Again, ugh.
So...what do you want? What would you do? Is there an alternative I haven't thought of other than Interfering Douche?
**Oh, that's right. I quoted Paula Abdul.
Wednesday, April 28
This Old House: the Makeshift Edition
Back in the day, about 6 years of days, we were in the zooone with this house. We managed to repaint every single room. Have wallpaper stripped. Remove carpet and have wood floors refinished. Outfit 2300 sq. feet AND a garage AND a basement with some useful and some not so useful crap. Replace faucets. Hang new light fixtures. Landscape the front yard. Redo plaster walls. And I'm sure lots of other rather tedious projects I've forgotten due to fume inhalation.
Clearly then we had more money and less kids. With regards to house projects, this is a bit of a winning combination.
However, given all that we did accomplish, we still have a front entry way withOUT a ceiling. Our house is about 85 years old and some things are fabulous (glass doorknobs! cherry molding!) and some things are so very hoopty. Like the bizarre-o office grade drop ceiling the previous owners installed in our entryway. Who does that in a house? Anyway, when we were in the zooone about three years ago--T and I had the great inspiration to rip down the ceiling, install a stamped metal ceiling, repaint the molding, repaint the walls and hang a new light fixture.
ahhh...lovely...
But instead he ripped down the entire ceiling which involved a dust cloud, me closing him in the entryway lest the dust cloud envelope our home furnishings and him shoveling the front entryway ceiling into a garbage bag.
And so I give you what I've been staring at, or rather what the top of my head has been staring at, for the last bazillion years.
Balls.
The brick and most of the mortar is in pretty good shape, but there are ("were" as of today, suckas!) some dodgy areas due to age and shifting. Around our basement window, around some other windows, cracks in a few spots.
Years ago we had a mason come out and look at it and he quoted us $900 to fix it. Pfffft. We ignored him because it wasn't as if the house was crumbling down arrouuund us. It just look like it needed some TLC; hugs on the outside.
So we went and had babies and lost any and all discretionary income until, apparently, T felt big in the britches and called another mason to look at the problem spots.
This mason character quoted us $125. Cash. T made it $140 and had him fix something else.
So tonight I sleep well knowing that all won't crumble around or on top of me, although, that ceiling still lurks.
Waiting.
Clearly then we had more money and less kids. With regards to house projects, this is a bit of a winning combination.
However, given all that we did accomplish, we still have a front entry way withOUT a ceiling. Our house is about 85 years old and some things are fabulous (glass doorknobs! cherry molding!) and some things are so very hoopty. Like the bizarre-o office grade drop ceiling the previous owners installed in our entryway. Who does that in a house? Anyway, when we were in the zooone about three years ago--T and I had the great inspiration to rip down the ceiling, install a stamped metal ceiling, repaint the molding, repaint the walls and hang a new light fixture.
ahhh...lovely...
So one afternoon, T felt saucy and decided to rip down a few of the hanging ceiling tiles to see what was underneath. "To know what I'm working with when I install the new ceiling," he said. I begged him to only remove a few because I had a feeling--a niggling, if you will--that his project would not exactly take flight like I hoped. *cough*3YearsLater*cough*
But instead he ripped down the entire ceiling which involved a dust cloud, me closing him in the entryway lest the dust cloud envelope our home furnishings and him shoveling the front entryway ceiling into a garbage bag.
And so I give you what I've been staring at, or rather what the top of my head has been staring at, for the last bazillion years.
Balls.
Paint chips curling from age. Not a good sign.
All this to say that something else we started three years ago--having the mortar on the outside of our house repaired--actually came to fruition today.
The brick and most of the mortar is in pretty good shape, but there are ("were" as of today, suckas!) some dodgy areas due to age and shifting. Around our basement window, around some other windows, cracks in a few spots.
Years ago we had a mason come out and look at it and he quoted us $900 to fix it. Pfffft. We ignored him because it wasn't as if the house was crumbling down arrouuund us. It just look like it needed some TLC; hugs on the outside.
So we went and had babies and lost any and all discretionary income until, apparently, T felt big in the britches and called another mason to look at the problem spots.
This mason character quoted us $125. Cash. T made it $140 and had him fix something else.
So tonight I sleep well knowing that all won't crumble around or on top of me, although, that ceiling still lurks.
Waiting.
Monday, April 26
Grabby Patty meet Pistol Pete
I'm so tired I could cry.
You know when you were little (or, like, yesterday) and you would tap the bottom of the glass you were drinking out of to get the very last morsels of chocolate milk or soda or milkshake down the glass and into your maw?
Well, substitute Energy Level for milkshake and you'll know how I'm feeling. I was in the shower Sunday morning and I was trying hard to remember the last time I've felt so tapped out to the marrow of my bones. This is quite possibly the tiredest I've ever ever been and I think it all goes to that fact that parenting as a semi-loneish wolf will kill you early. Early.
Sure, T is still around and I by no means think he's got the more glamorous end of the stick by spending 5 hours on the road to go to University Hospital. That's sucktastic and he looks worse than I feel. It's bleak.
But wrangling Ezra on the weekend and manning the fort and trying to keep things up and running while also working during the week has left me with nothing. I could easily drink iced mochas instead of eating meals and I've contemplated it more than once (it's been only the cost that has deterred me). If we're remotely near any of the Starbucks I frequent, Ezra asks, "Toffee? Dat way?" My mom commented, "My, your coffees are getting larger each week." I responded with, "As is my exhaustion."
Monday through Friday move quite seamlessly. Saturday morning I'm excited to spend time with Ezra and have 48 hours where we can do anything we want. On Sunday I weep. I don't know if it's the need for laundry and grocery shopping to be completed that puts me over the edge, but for whatever reason Sunday leaves me a mouthbreather.
At any rate, I think we've established that I'm tired--but, really, who the hell isn't? If you're not a working mom who's tired then you're a stay at home mom who's clock has been cleaned and if not that, then a working stiff without kids but who is fighting to keep their job. It all boils down to a very strong need for Tylenol PMs (Advil PMs, Vicodin, Unisom, Benadryl, Ambien, etc.) and my thanks to its creator.
Someone the other day mentioned, "It must be really hard to be on your own with Ezra at this age." And, really, he's been kind of a dreamboat. We can discuss stuff. I can tell him what we're going to do for the day. We walk side by side. He likes it when I tickle him. I can take him out in public and have it go somewhat smoothly. He doesn't really wig out about much. He's good looking and laughs at my jokes. He likes to have snacks. All a boon in a weekend companion.
While he was napping on Saturday, I couldn't wait for him to wake up so that we could spend more time together and head to the park. Now I by no means wanted to him wake up one second before his two and half hour nap was over--but once he was up, well, I was happy be with him once more.
Lately, however, he's been kind of...opinionated. His new phrase is, "I DOOOO it." Sometimes it comes out all huffy-like and I expect him to say, "I DOOOO it, bitch."
Climbing stairs. Pushing the shopping cart. Pushing the buttons on the microwave. Opening the refrigerator. Opening the door to Starbucks. Balancing the checkbook. All he can apparently do on his own. And I want to say, "Listen, slick, if you can carry this basket at Target why the heck are you still crapping your pants?"
His other major thing is, "I HAB it?" Translation: I have it? Translation of the translation: I want it now. Fork it over. Often we tell him "no," and lo if this doesn't mean the world's ending because he can't hold a steak knife. Sometimes we say, "Okay. How do you ask politely?" He, like a trained monkey, will say "please" and we'll hand over the spatula.
For any parents out there, what are you doing to teach saying "please"? Ezra is great with other pleasantries like "thank you" and "excuse me," but "please" requires a constant reminder. I am so tired (theme!) of prompting him for it. Meh. I guess he's not yet two, so should I cut him some slack? Let me know what you think.
Because I seem to be on a roll talking about my kids here, it appears as if the wheels have been set in motion to transfer Iris back to town to her Original Hospital Digs. We hope that it is sometime this week and frankly I'd drive the helicopter if it would get her here sooner.
Speaking of helicopters, T and I had a rowdy Friday night that included watching the A-Team on television. Man, that show is hoopty but didn't it rock back in the day? However, I found Murdock to not being as completely wacky as he seemed back in 1985 and Faceman not as handsome.
Maybe this means I'm getting old.
You know when you were little (or, like, yesterday) and you would tap the bottom of the glass you were drinking out of to get the very last morsels of chocolate milk or soda or milkshake down the glass and into your maw?
Well, substitute Energy Level for milkshake and you'll know how I'm feeling. I was in the shower Sunday morning and I was trying hard to remember the last time I've felt so tapped out to the marrow of my bones. This is quite possibly the tiredest I've ever ever been and I think it all goes to that fact that parenting as a semi-loneish wolf will kill you early. Early.
Sure, T is still around and I by no means think he's got the more glamorous end of the stick by spending 5 hours on the road to go to University Hospital. That's sucktastic and he looks worse than I feel. It's bleak.
But wrangling Ezra on the weekend and manning the fort and trying to keep things up and running while also working during the week has left me with nothing. I could easily drink iced mochas instead of eating meals and I've contemplated it more than once (it's been only the cost that has deterred me). If we're remotely near any of the Starbucks I frequent, Ezra asks, "Toffee? Dat way?" My mom commented, "My, your coffees are getting larger each week." I responded with, "As is my exhaustion."
Monday through Friday move quite seamlessly. Saturday morning I'm excited to spend time with Ezra and have 48 hours where we can do anything we want. On Sunday I weep. I don't know if it's the need for laundry and grocery shopping to be completed that puts me over the edge, but for whatever reason Sunday leaves me a mouthbreather.
At any rate, I think we've established that I'm tired--but, really, who the hell isn't? If you're not a working mom who's tired then you're a stay at home mom who's clock has been cleaned and if not that, then a working stiff without kids but who is fighting to keep their job. It all boils down to a very strong need for Tylenol PMs (Advil PMs, Vicodin, Unisom, Benadryl, Ambien, etc.) and my thanks to its creator.
Someone the other day mentioned, "It must be really hard to be on your own with Ezra at this age." And, really, he's been kind of a dreamboat. We can discuss stuff. I can tell him what we're going to do for the day. We walk side by side. He likes it when I tickle him. I can take him out in public and have it go somewhat smoothly. He doesn't really wig out about much. He's good looking and laughs at my jokes. He likes to have snacks. All a boon in a weekend companion.
While he was napping on Saturday, I couldn't wait for him to wake up so that we could spend more time together and head to the park. Now I by no means wanted to him wake up one second before his two and half hour nap was over--but once he was up, well, I was happy be with him once more.
Lately, however, he's been kind of...opinionated. His new phrase is, "I DOOOO it." Sometimes it comes out all huffy-like and I expect him to say, "I DOOOO it, bitch."
Climbing stairs. Pushing the shopping cart. Pushing the buttons on the microwave. Opening the refrigerator. Opening the door to Starbucks. Balancing the checkbook. All he can apparently do on his own. And I want to say, "Listen, slick, if you can carry this basket at Target why the heck are you still crapping your pants?"
His other major thing is, "I HAB it?" Translation: I have it? Translation of the translation: I want it now. Fork it over. Often we tell him "no," and lo if this doesn't mean the world's ending because he can't hold a steak knife. Sometimes we say, "Okay. How do you ask politely?" He, like a trained monkey, will say "please" and we'll hand over the spatula.
For any parents out there, what are you doing to teach saying "please"? Ezra is great with other pleasantries like "thank you" and "excuse me," but "please" requires a constant reminder. I am so tired (theme!) of prompting him for it. Meh. I guess he's not yet two, so should I cut him some slack? Let me know what you think.
Because I seem to be on a roll talking about my kids here, it appears as if the wheels have been set in motion to transfer Iris back to town to her Original Hospital Digs. We hope that it is sometime this week and frankly I'd drive the helicopter if it would get her here sooner.
Speaking of helicopters, T and I had a rowdy Friday night that included watching the A-Team on television. Man, that show is hoopty but didn't it rock back in the day? However, I found Murdock to not being as completely wacky as he seemed back in 1985 and Faceman not as handsome.
Maybe this means I'm getting old.
Sunday, April 25
Walk on
Yesterday was the March of Dimes walk. From Friday on, the weather prediction for this weekend has been crap on a stick and I was bummed as I really wanted to walk but couldn't justify wheeling Ezra through a downpour.
Saturday morning I dithered, but remembered the Stokke came with a plastic raincover. I managed to find it in the basement and Tendo rigged it up. I showered, fed Ezra some breakfast and we were out the door in our Team Iris shirts. T headed to University Hospital to spend time with Iris and crack the stick on doctors.
The walk itself was pretty uneventful. It didn't rain once, we ate hot dogs ("hock dogs" per Ezra) after and then we headed home to a much needed nap for Little Man.
What was most meaningful is that I ran into the parents of two of Iris' neighbors. It's funny: being a parent, you already have this kind of similar bond/place in life/ability to smile knowingly as other parents. I might not like some of the other parents I meet, but--hey--they have kids, I have kids; we'll always have something to talk about. With parents from the NICU, you not only share the fact that you have kids, but you share the pain. The journey might have been different, but the pain isn't. It's an unfortunate kinship.
The first parent, she and her little boy left in January. So much of their story is similar to ours. His mom had a rough pregnancy after a first pregnancy that was super easy. His twin didn't make it. He needed multiple surgeries. He kept confounding and then astounding the doctors. He had a toddler sister at home. He was there for over five months. It was good to see her and talk about how her baby is doing and what he's striving in and what he's struggling with.
The second parent was the parent of Iris' direct neighbor who was also born at 23 weeks, on Christmas Day no less. He and his mom weren't there because he just went home on Friday. His dad was there and we hugged. Again, we just kind of looked at each other because we each have seen the other one break down and push on. To be privy to that kind of emotion that most people try keep from strangers, again, kind of makes the NICU an odd place of forced familiarity. I was/am so, so happy to hear of their baby being home.
Maybe next year we all can walk together.
Friday, April 23
Why yes, yes it is
With Ezra on our way to daycare and work:
Me: "Look there's the river."
Ezra: "Fishies?"
"Yep. There are fishes in there. Hey, there are some people running."
"Esercise!"
"Yep. They're exercising. Exercise is good for your body."
"And biscuits?" (while also grabbing his own biscuits)
"Yeah, I guess it's good for your biscuits too."
Me: "Look there's the river."
Ezra: "Fishies?"
"Yep. There are fishes in there. Hey, there are some people running."
"Esercise!"
"Yep. They're exercising. Exercise is good for your body."
"And biscuits?" (while also grabbing his own biscuits)
"Yeah, I guess it's good for your biscuits too."
Wednesday, April 21
Chugga chugga
From a recent gchat with Sam:
samantha: sigh
how is iris? still chugging along?
me: like freakin' thomas the train
samantha: WOO WOO!
me: right?!
with george carlin all narrating and whatnot
samantha: i like ringo
but then again, i have MET HIM so i might be biased
me: sassy
****
So, Iris is doing really, really well. T was there today and so far...
samantha: sigh
how is iris? still chugging along?
me: like freakin' thomas the train
samantha: WOO WOO!
me: right?!
with george carlin all narrating and whatnot
samantha: i like ringo
but then again, i have MET HIM so i might be biased
me: sassy
****
So, Iris is doing really, really well. T was there today and so far...
- She is on 60% oxygen
- Has her chest closed completely
- Is getting food
- Is completely off the dopamine and epinephrine since her blood pressure is maintaining itself
- No longer has a chest tube in since her internal wounds are healing well and no longer draining (ick)
- Is no longer on nitric oxide to keep her lungs soft and moveable
- Has had one of her heart blood pressure monitors removed
- Is on reduced amounts of pain meds
- No longer on a paralytic
She's still on the ventilator (boo hiss), but T and I were prepared for that. T pressed the cardiologist today as to what they're looking for in order to extubate her (get her off the ventilator) and finally the doctor gave him some benchmarks for what the settings need to be. As they check her blood gasses regularly and if they look good, the settings are turned down so eventually she'll get there; the doctor thought perhaps even by Monday.
Folks, this is huge. A week ago, T and I thought we were going to lose Iris. Today she is healing at a miraculous pace.
Tomorrow I drive to University Hospital to spend some time with her. I can't wait.
Tuesday, April 20
It's like the Sahara up in here
When it all got a bit hairy early last week, I decided to pull the plug on my pump. The milk business had already taken a bit of a hit to due to my erratic eating and high stress levels. And pumping in the bathroom at the hospital? More than a little yucky.
On Tuesday, I pumped four times.
On Wednesday, I didn't take the pump to work and felt not only lighter but kind of like my sidekick, who I didn't like all that much anyway, had been left in the dust. Kind of like the sad mop on those Swiffer commercials. I only pumped twice.
On Thursday, my chest started to resemble Heidi Montag's new Goodyear blimps and I pumped once after work because I was pretty sure I was going to ex.plode. (Sorry for that visual. Both real and figurative.)
On Friday, I didn't pump at all but had to take a crapton of ibuprofen and asked T not to hug me. At all. I winced whenever Ezra flailed near me.
Things have been good ever since. I little wince-y if Ezra barrels into me, but that's about it. The rental company is coming to pick up the pump this evening and I couldn't be more excited. In fact, it's already on the curb. Looking oh so available.
Exclusively pumping for over five months was heinous. I absolutely hated it every single time I had to do it. Now that I don't have to, I relish the time available in the evening that I'm not spending labeling bottles, stashing bottles, cleaning equipment, setting up the pump on my nightstand and pumping before bed when really all I want to do is sleep. No more waking up early to pump and then spending the harried time before leaving home, again with the labeling and stashing of bottles.
I have modicum of guilt for not keeping up with it. As sucky as it was, I was still in a groove. The boob groove. But whatever--the deep freeze in our basement is full to the brim and Red Door's freezer in her basement is also full to the brim (she's a good friend, that one).
In the meantime, Iris can still have her cocktails and I can have some free time back.
On Tuesday, I pumped four times.
On Wednesday, I didn't take the pump to work and felt not only lighter but kind of like my sidekick, who I didn't like all that much anyway, had been left in the dust. Kind of like the sad mop on those Swiffer commercials. I only pumped twice.
On Thursday, my chest started to resemble Heidi Montag's new Goodyear blimps and I pumped once after work because I was pretty sure I was going to ex.plode. (Sorry for that visual. Both real and figurative.)
On Friday, I didn't pump at all but had to take a crapton of ibuprofen and asked T not to hug me. At all. I winced whenever Ezra flailed near me.
Things have been good ever since. I little wince-y if Ezra barrels into me, but that's about it. The rental company is coming to pick up the pump this evening and I couldn't be more excited. In fact, it's already on the curb. Looking oh so available.
Exclusively pumping for over five months was heinous. I absolutely hated it every single time I had to do it. Now that I don't have to, I relish the time available in the evening that I'm not spending labeling bottles, stashing bottles, cleaning equipment, setting up the pump on my nightstand and pumping before bed when really all I want to do is sleep. No more waking up early to pump and then spending the harried time before leaving home, again with the labeling and stashing of bottles.
I have modicum of guilt for not keeping up with it. As sucky as it was, I was still in a groove. The boob groove. But whatever--the deep freeze in our basement is full to the brim and Red Door's freezer in her basement is also full to the brim (she's a good friend, that one).
In the meantime, Iris can still have her cocktails and I can have some free time back.
Monday, April 19
Wave your hands in the air like you just don't care
Since I like to live by general consensus, I have some questions for which I need answers.
Please give me your thoughts on...
Please give me your thoughts on...
- ...how often you wash your bras. I read some online posting about this and was aghast at what I read.
- ...do you change your purse or bag to match your outfit or do you carry the same one?
- ...along the same lines, do you carry a purse OR a bag?
- ...would you rather be super fit or super beautiful?
- ...do you exercise?
- ...do you and your significant other go to bed at the same time?
- ...what time does your baby/toddler go to bed and what time do they wake up?
- ...do you and your significant other smooch a lot?
- ...if you could kick one person in the neck right now, who would it be?
- ...would you rather be a ninja or a super secret spy?
Gracias.
Saturday, April 17
Breakfast time
This being the best picture. T had to rub Baby Bear's tummy and say that he was full to explain why exactly Baby Bear wasn't eating his fair share of the Nutrigrain bar.
E was dubious.
Friday, April 16
Comfort found at Exit 133
So the VW and I hauled biscuits today to University Hospital.
Can I just say this and get it out of the way? I have been driving like an asshat. Also like a douchebag. On Monday night, it was anger and an intense need to smell my son's neck that had me driving 90. On Tuesday afternoon, it was crazy grief that caused me to realize--after the fact, no less--that I passed someone on the right. On the shoulder. I know. I know. After I did it, I clapped my hand over my mouth and slunk down in my seat. Today was a bit better, but really only because I counted no less than EIGHT police cars on the way home and the shoulder was riddled with ginormous raccoon carcasses.
At any rate, I was at the hospital and all is moving along smoothly and quietly (knock knock on the wood) for Iris. She is on a drip of a diuretic to help her shed some water weight due to the surgery. Once she is down to her dry weight (kind of like a spice), they will close her chest up. Praise Jesus. In the meantime, though, they're keeping her pretty still and sleepy and pain free. As the nurse put it, "If my chest was open, I'd want them to keep me still too."
They are also weaning her off the nitric oxide that they've been using to keep her lungs "soft" or free of hypertension due to the pummeling of blood they were used to receiving via the hole.
What else...Oh, they started feeding her today. After surgery, especially major surgery, your guts slooooowww doowwwwn. So, they're giving her a small, continuous drip of milk to "prime" her guts and get them crack a' lackin' again.
What else...Her heart rate has been super stellar and her blood pressures pretty good. Every now and then her blood pressure will dip, but the suspicion is that these pressures are acting up now due to her lungs. Her heart has gotten its act together, but the lungs have always been troublemakers. This is yet another reason for keeping her still and sleepy. By letting the ventilator work for her and keeping her from fighting it, her lungs can rest and repair--thereby coming back stronger. As Iris' lungs prove themselves, they will gradually turn down her ventilator settings; settings that are higher now than they even were after her birth. That's how bad them guys are.
Our hope is that things will continue to move slowly and progressively forward. Already more of everyone's focus has turned to Iris' lungs--a good sign for her ticker.
Iris doesn't need to be extubated, or off the ventilator, in order to be transferred back to the hospital here in town. Only needs to be out of the woods and with her heart. We continue to pray that that transfer happens soon. As much as I may have moaned in a dramatic fashion about going to the hospital everyday, sonofabitch if that isn't easier than figuring out which one of us is going to forego work and spend 5 hours on the road. Perspective, I suppose, being the largest of God's kick in the drawers.
In between realizing that my daughter might actually survive This Hot Mess That Has Been Her Life Thus Far and hoping my stress-related hives disappear, I've been dropping a hot dime at the Banana Republic Outlet. Conveniently located at exit 133 on my way too and from University Hospital, I keep coming home with what T calls "parcels." Usually hit or miss, the Banana Republic has been fantastically HIT as of late. As a result, so has the checking account. Not sure when I'm going to exactly be wearing all my new snazzy duds as on hospital-visit days I sport stretchy pants and on work days, I'm usually running late and grab something quick--but whatever. Someday, maybe soon?, I'll have my act together.
Can I just say this and get it out of the way? I have been driving like an asshat. Also like a douchebag. On Monday night, it was anger and an intense need to smell my son's neck that had me driving 90. On Tuesday afternoon, it was crazy grief that caused me to realize--after the fact, no less--that I passed someone on the right. On the shoulder. I know. I know. After I did it, I clapped my hand over my mouth and slunk down in my seat. Today was a bit better, but really only because I counted no less than EIGHT police cars on the way home and the shoulder was riddled with ginormous raccoon carcasses.
At any rate, I was at the hospital and all is moving along smoothly and quietly (knock knock on the wood) for Iris. She is on a drip of a diuretic to help her shed some water weight due to the surgery. Once she is down to her dry weight (kind of like a spice), they will close her chest up. Praise Jesus. In the meantime, though, they're keeping her pretty still and sleepy and pain free. As the nurse put it, "If my chest was open, I'd want them to keep me still too."
They are also weaning her off the nitric oxide that they've been using to keep her lungs "soft" or free of hypertension due to the pummeling of blood they were used to receiving via the hole.
What else...Oh, they started feeding her today. After surgery, especially major surgery, your guts slooooowww doowwwwn. So, they're giving her a small, continuous drip of milk to "prime" her guts and get them crack a' lackin' again.
What else...Her heart rate has been super stellar and her blood pressures pretty good. Every now and then her blood pressure will dip, but the suspicion is that these pressures are acting up now due to her lungs. Her heart has gotten its act together, but the lungs have always been troublemakers. This is yet another reason for keeping her still and sleepy. By letting the ventilator work for her and keeping her from fighting it, her lungs can rest and repair--thereby coming back stronger. As Iris' lungs prove themselves, they will gradually turn down her ventilator settings; settings that are higher now than they even were after her birth. That's how bad them guys are.
Our hope is that things will continue to move slowly and progressively forward. Already more of everyone's focus has turned to Iris' lungs--a good sign for her ticker.
Iris doesn't need to be extubated, or off the ventilator, in order to be transferred back to the hospital here in town. Only needs to be out of the woods and with her heart. We continue to pray that that transfer happens soon. As much as I may have moaned in a dramatic fashion about going to the hospital everyday, sonofabitch if that isn't easier than figuring out which one of us is going to forego work and spend 5 hours on the road. Perspective, I suppose, being the largest of God's kick in the drawers.
In between realizing that my daughter might actually survive This Hot Mess That Has Been Her Life Thus Far and hoping my stress-related hives disappear, I've been dropping a hot dime at the Banana Republic Outlet. Conveniently located at exit 133 on my way too and from University Hospital, I keep coming home with what T calls "parcels." Usually hit or miss, the Banana Republic has been fantastically HIT as of late. As a result, so has the checking account. Not sure when I'm going to exactly be wearing all my new snazzy duds as on hospital-visit days I sport stretchy pants and on work days, I'm usually running late and grab something quick--but whatever. Someday, maybe soon?, I'll have my act together.
Thursday, April 15
Chronologically speaking
Friday...
- Spent time in limbo as to how and when University Hospital would pick her up
- At 2pm she was scooped up in the ambulance, driven to the helicopter and flown across the state
- I ate McDonald's and drove over to meet her; T manned the fort at home and spent time with Ezra
- I got hotly assertive with University Hospital staff and nurses (and then cried thereby eliminating my role as Pulled Together Parent) and missed our old nurses
- Chewed on my shoulder because I wouldn't see Ezra before he went to bed
- Arrived home at 10:00pm
Saturday...
- Ezra woke up at the break of dawn; T and I ignored him
- T left at 9am to spend time with baby girl
- Ezra and I went to Gymboree, stared at the cable man's butt crack while he fixed our cable, took naps, went to the park and ate dinner with my parents
- T came home at 6pm and looked like the dead
Sunday...
- Ezra slept in until 8am
- T went to the hospital to spend time with baby girl
- Ezra and I went swimming, went with my dad to pick up Iris' chair for her room and ate dinner with my parents
- University Hospital moved Iris' place in surgery up to 7:30am, asking us to be there at 6am
- T and I waffled over the phone whether or not I, being a morning person, should leave that night or leave in the morning. We chose morning.
- I exchanged terse words with University Hospital social worker over our decision.
- T came home at 7pm and looked even more dead
- We spent time with friends
- I set my alarm for 3am and laid out my clothes
Monday...
- Felt sleepy but excited upon waking, shower and left home at 3:45am
- Realized it's pretty damn dark at 3:45am
- Also, there is no traffic
- Arrive at hospital in record time and was able to spend an hour and a half holding baby girl
- She was wheeled into surgery at 7:30am, surgery was planned for 3-4 hours
- I ate a very excellent cheese omelet in the hospital cafeteria and successfully avoided the doughnuts
- T was on daycare drop-off duty and arrived at 10:30am
- Noon: waiting
- 2:45pm: waiting
- 4:00pm: waiting
- 5:00pm: waiting
- 5:30pm: Horrible update from surgeon's assistant, pediatric cardiologist and anesthesiologist
- Cried for long time in waiting room and decided to leave so that I can do bath and bedtime with Ezra
- T waited for Iris to come out of surgery and see her before he left and headed to his hotel for the night
- Cried all the way home
- Bath and bedtime for Ezra and I
Tuesday...
- Received call from surgeon's assistant at 6:30am. Felt convinced that he was calling to tell us that Iris didn't make it. Turns out he needed to drain some accumulated fluid from her chest.
- Moved like a zombie upon drop off for Ezra and drive to hospital. Cried most of the way there
- Meet T at the hospital and spent time with Iris
- Had lunch and discussed how the hell we're going to make it through this
- Spent more time with Iris
- Had tough love conversation with surgeon
- Headed home in order to pick up Ezra from daycare
- Cried all the way there and wondered if Iris was meant to be with Noah
- Spent time with Ezra in the evening and for the life of me that's all I can remember about the rest of Tuesday
Wednesday...
- Woke up and called about baby girl; heard she had a stable night
- Got ready for work and felt happy to have the routine and then guilty because what if Iris didn't make it and I have to live with the fact that I was placated by work
- T headed to the other side of the state
- Ezra was sleepy in the car and asks for a paci; I caved in and gave him one
- I forgot to get a coffee, even after Ezra wondered out loud "Wong way? Toffee?"
- Fielded gentle inquiries from everyone under the sun
- Tried to hustle biscuits at work and catch-up
- Spent my first lunch in over 5 months not at the hospital
- Wondered how to answer emails from people wondering how Iris is
- Picked up Ezra and decided that tonight was the night for an ice cream cone
- Spent time with T and Ezra
- Ignored dinner
- Got hives
- Went to bed preoccupied
Today Iris has been better. This morning, 72 hours after surgery, her heart decided it wants to beat on its own. Monday and Tuesday this wasn't the case as she has been the on the heart/lung bypass machine since then and its been doing her heart's work. Her chest is still open and I can see her breast bone and heart and blood and ribs. She is on an external pacemaker, a ventilator, epinephrine, morphine, dopamine, a diuretic, a paralytic, TPN, potassium, 3 antibiotics and about 3 other meds I'm not sure what they're called. Last night T and I discussed funeral arrangements if she didn't make it. This morning we fully expected to have to make the decision to end the machine support her body and heart were receiving.
I have cried.
I have felt peace.
I have wanted it over with.
An hour ago they took her off the heart/lung bypass machine and wheeled it out of the room.
I think our girl might make it.
Thursday, April 8
Driving along in my automobile
Ezra's newest request is, "Drive? DRIVE?! DRIIIIVVIIING?"
It was a few weeks ago when T came home with a rental car because he would be traveling the next day. Because of its size, the rental car looked much like the beloved loaner mini van I had over a month ago and of which Ezra has never forgiven me for returning to the body shop. Seriously. He asks for it almost everyday when we walk of out daycare. "Van? Van? Van?" I want to tell him, "Give it up, kid. I am never driving a mini van."
At any rate, the rental car was some behemoth that dazzled Ezra to no end. T put him in the front seat, T in the passenger, me in the back and my dad--who was over visiting--sitting next to me.
In our driveway.
Going nowhere.
While Ezra honked the horn repeatedly. And pushed any number of buttons.
Bringing the story around, he still loves to sit in our cars. It is often what you can find us doing after dinner and before bath.
Sitting in a parked car.
In our driveway.
Going nowhere.
It was a few weeks ago when T came home with a rental car because he would be traveling the next day. Because of its size, the rental car looked much like the beloved loaner mini van I had over a month ago and of which Ezra has never forgiven me for returning to the body shop. Seriously. He asks for it almost everyday when we walk of out daycare. "Van? Van? Van?" I want to tell him, "Give it up, kid. I am never driving a mini van."
At any rate, the rental car was some behemoth that dazzled Ezra to no end. T put him in the front seat, T in the passenger, me in the back and my dad--who was over visiting--sitting next to me.
In our driveway.
Going nowhere.
While Ezra honked the horn repeatedly. And pushed any number of buttons.
Bringing the story around, he still loves to sit in our cars. It is often what you can find us doing after dinner and before bath.
Sitting in a parked car.
In our driveway.
Going nowhere.
God love him. He's got the same Shiny Metal Fever that his father and grandfather have.
Wednesday, April 7
Blech
You know that phrase of being sick and tired of being, well, sick and tired? I am there.
Here I sit with a baggie full of Easter ham and glass of apple juice and wish I could fast forward through the upcoming weeks.
I headed out to Target to get a second car seat for Ezra and felt guilty for missing his bath and bedtime.
While at Target, I wished I were at home and in bed. These days I can't sleep without being aided by Tylenol PMs.
I came home and firmly told T to leave me alone; not wanting to snip at him because I feel so sad and so stressed and so over it.
I feel myself getting mad at people when they try to be helpful. I feel myself getting mad at people for not being helpful enough. And then I get mad for forgetting that everyone else's life needs to move forward even when our's never seems to.
Today was good, but tonight seems to have gone down the toilet.
Here I sit with a baggie full of Easter ham and glass of apple juice and wish I could fast forward through the upcoming weeks.
I headed out to Target to get a second car seat for Ezra and felt guilty for missing his bath and bedtime.
While at Target, I wished I were at home and in bed. These days I can't sleep without being aided by Tylenol PMs.
I came home and firmly told T to leave me alone; not wanting to snip at him because I feel so sad and so stressed and so over it.
I feel myself getting mad at people when they try to be helpful. I feel myself getting mad at people for not being helpful enough. And then I get mad for forgetting that everyone else's life needs to move forward even when our's never seems to.
Today was good, but tonight seems to have gone down the toilet.
Sunday, April 4
Saturday, April 3
Lone wolf
This afternoon we went all Middle America and decided to go to the mall. I'm not a huge fan of the mall--I'd rather order crap online or buy it at Target. T? The mall makes him chew on his shoulder.
Anyway, I needed three gift cards and so the three of us loaded up in the car with a crapton of Kleenexes because holy hell is Ezra's nose running like a freaking tap. It's revolting.
The trip itself went smoothly enough. I procured my three gift cards plus two new shirts from Banana Republic, T nabbed himself an Orange Julius and Ezra rode on the carousel. Not on an actual horse, mind you, but in one of those chariot-bench things which seems kind of silly to be sitting on in a carousel but whatever. The horse looked shifty apparently and he was having none of it.
Ezra also scored himself a ride in one of those fancy strollers shaped like a car and cost money to use. I'm mildly embarrassed to admit that we paid $5.00 to use that stroller, but whatever. What was even more ludicrous was what we went through to get him the stroller. A stroller he had zero idea even existed but that I thought would be fun for him to use.
It went something like this:
Circle parking lot until finding spot near Barnes & Noble
Realize that the car strollers aren't near Barnes & Noble but at another entrance
Move car closer to that entrance
Realize the car stroller kiosk doesn't take cards and T only has a $1
Walk towards center of mall in search of ATM
Stop to stare at Live! (human) Easter Bunny while T continues on to ATM
Continue to wait for T
Call T
T got lost in the mall (I know) and is now heading back
Tell T to make sure he has either ones or fives
He's off to go break the bills he got out of the ATM
Wait some more
Head to Stride Rite to look at their boys sandals
Wait some more
Walk over to stroller cars and pick one out
Wait some more
T arrives
I figure out how the stroller kiosk works
We're off in Car #9
35 minutes folks.
As we're walking away, I tell T, "You can tell Ezra is on his own right now. Because there is now way I'd be doing all that with a packload of kids milling about. They'd be hoofin' it." T responds, "Yeah. He better live it up now."
Ezra only rode in that bad boy for about half of our visit. The rest of the time T or I were pushing it around.
Lordy.
Anyway, I needed three gift cards and so the three of us loaded up in the car with a crapton of Kleenexes because holy hell is Ezra's nose running like a freaking tap. It's revolting.
The trip itself went smoothly enough. I procured my three gift cards plus two new shirts from Banana Republic, T nabbed himself an Orange Julius and Ezra rode on the carousel. Not on an actual horse, mind you, but in one of those chariot-bench things which seems kind of silly to be sitting on in a carousel but whatever. The horse looked shifty apparently and he was having none of it.
Ezra also scored himself a ride in one of those fancy strollers shaped like a car and cost money to use. I'm mildly embarrassed to admit that we paid $5.00 to use that stroller, but whatever. What was even more ludicrous was what we went through to get him the stroller. A stroller he had zero idea even existed but that I thought would be fun for him to use.
It went something like this:
Circle parking lot until finding spot near Barnes & Noble
Realize that the car strollers aren't near Barnes & Noble but at another entrance
Move car closer to that entrance
Realize the car stroller kiosk doesn't take cards and T only has a $1
Walk towards center of mall in search of ATM
Stop to stare at Live! (human) Easter Bunny while T continues on to ATM
Continue to wait for T
Call T
T got lost in the mall (I know) and is now heading back
Tell T to make sure he has either ones or fives
He's off to go break the bills he got out of the ATM
Wait some more
Head to Stride Rite to look at their boys sandals
Wait some more
Walk over to stroller cars and pick one out
Wait some more
T arrives
I figure out how the stroller kiosk works
We're off in Car #9
35 minutes folks.
As we're walking away, I tell T, "You can tell Ezra is on his own right now. Because there is now way I'd be doing all that with a packload of kids milling about. They'd be hoofin' it." T responds, "Yeah. He better live it up now."
Ezra only rode in that bad boy for about half of our visit. The rest of the time T or I were pushing it around.
Lordy.
Friday, April 2
Miscellany
I'm not sure if any of you can relate or if you're all just living completely opposite relationships than me (entirely possible as I seem to hassle my husband an inordinate amount), but T and I don't often have time to talk. It's not from lack of desire to chat--I love to chat--or that we're boooorrred with one another--I still find him quite sassy--it's just that...we're tired.
By the time 7:30pm rolls around and Ezra is in bed, I find myself without any pants on, putzing around the house, putting things away. T looks like wilted lettuce and lays on our bed. We both somehow seem to meet in the kitchen around 8:00pm where I explain my need for a Frosty and he sighs that he has reports and spreadsheets and maths to get done. We shuffle into the living room where I dream of my Frosty and he cracks out his computer. I then go to bed at 9:00pm and soon a new day begins.
This Wednesday, however, we found ourselves in the waiting room of Iris' pediatric cardiologist armed with coffees and no Ezra. I also had pants on. Given the opportunity we quickly discussed the following: whether or not we should have more children, our plan to sell some stocks we have and who should sell them, how I shaved my legs on Monday but now they were prickly, what we wanted to ask the cardiologist, what we should do on Thursday, what we should get Ezra for his second birthday, whether we should try to get away for a night before Iris comes home and countless other things. We crammed a crapton of discussion in just 40 minutes. It was fruitful. It was like five months of tired evenings being crammed into one 40 minute conversation with clear objectives.
Changing topics, I got a new phone. And it's red. And the ringtone isn't obnoxious. And, more importantly?, it has a full keyboard. I no longer have hoopty texting abilities, so expect more full sentences from me via the phone. Just sayin'.
Changing the topic yet again, once T and I found out that Iris was being moved across the state sometime next week and her surgery was scheduled for the week following--we kind of went into Nervous Nelly/Chicken Without Head mode. I was a twitching spaz the bulk of the workday on Wednesday and T kept calling me and saying, "I can't concentrate!"
For T, the biggest concern is the surgery itself. The risks, the infections, her rate of healing, how she'll look, OMG IT'S OPEN HEART.
For me, the biggest concern is our life balance and not being away from Ezra. At all. It's bringing back to the surface these mad dog feelings that I had when I was told I might have to be on bedrest in the hospital and away from him. I'm not sure what it is, but I just am unwilling to do it. And I'm not willing to be away from Iris either. They'll be greater physical distance, but T and I will be spending the same amount--probably more, really--time with her in the hospital as we do now. I just simply decided that if I have to rise at an ungodly hour or eat out a little bit more or be more tired or have the house be a bit less picked up--then so be it. I will take Ezra to school and I will pick him up and I will be with Iris whenever I can between those two times. One of us will always be home with Ezra. We will all be home to sleep.
So when T and I sat down to plan our next two weeks, it was ridiculous. I cried from the overwhelmingness of it all. I've written down a blow-by-blow of where the four of us will be up until the 20th--that way no one gets lost in the shuffle. It looks a lot like this: Me on drop off, me working in town, T in Plymouth for 9-10am mtg., T at U of M from Noon-4pm, me on pick-up, T home by bedtime. I'm old school and use a paper calendar; T is new school and uses his AfricanAmericanBerry.
In the meantime, I'm trying to get crackin' on thank you gifts for Iris' primary nurses (two daytime, two nighttime) and treats for the NICU staff as a whole and thank you cards for a bunch of other people who have helped us. Talking to one of Iris' nurses the other night, I totally cried. Sure, I'm Iris' mother--but these nurses have been the ones who kept her alive and I'm not sure how to really share how much that has meant to T and I. Not sure some pie and a gift card to Pottery Barn really conveys it, but I hope it expresses our gratitude a little.
And since this weekend will be the last weekend with Iris here in town before being scooted two hours away for her surgery. We're going to be heavy on the photo-taking so that when she's looking run through the ringer after surgery, I can remember her little face and crazy hair.
And holla if it isn't also going to be nice outside. It should be a good weekend.
By the time 7:30pm rolls around and Ezra is in bed, I find myself without any pants on, putzing around the house, putting things away. T looks like wilted lettuce and lays on our bed. We both somehow seem to meet in the kitchen around 8:00pm where I explain my need for a Frosty and he sighs that he has reports and spreadsheets and maths to get done. We shuffle into the living room where I dream of my Frosty and he cracks out his computer. I then go to bed at 9:00pm and soon a new day begins.
This Wednesday, however, we found ourselves in the waiting room of Iris' pediatric cardiologist armed with coffees and no Ezra. I also had pants on. Given the opportunity we quickly discussed the following: whether or not we should have more children, our plan to sell some stocks we have and who should sell them, how I shaved my legs on Monday but now they were prickly, what we wanted to ask the cardiologist, what we should do on Thursday, what we should get Ezra for his second birthday, whether we should try to get away for a night before Iris comes home and countless other things. We crammed a crapton of discussion in just 40 minutes. It was fruitful. It was like five months of tired evenings being crammed into one 40 minute conversation with clear objectives.
Changing topics, I got a new phone. And it's red. And the ringtone isn't obnoxious. And, more importantly?, it has a full keyboard. I no longer have hoopty texting abilities, so expect more full sentences from me via the phone. Just sayin'.
Changing the topic yet again, once T and I found out that Iris was being moved across the state sometime next week and her surgery was scheduled for the week following--we kind of went into Nervous Nelly/Chicken Without Head mode. I was a twitching spaz the bulk of the workday on Wednesday and T kept calling me and saying, "I can't concentrate!"
For T, the biggest concern is the surgery itself. The risks, the infections, her rate of healing, how she'll look, OMG IT'S OPEN HEART.
For me, the biggest concern is our life balance and not being away from Ezra. At all. It's bringing back to the surface these mad dog feelings that I had when I was told I might have to be on bedrest in the hospital and away from him. I'm not sure what it is, but I just am unwilling to do it. And I'm not willing to be away from Iris either. They'll be greater physical distance, but T and I will be spending the same amount--probably more, really--time with her in the hospital as we do now. I just simply decided that if I have to rise at an ungodly hour or eat out a little bit more or be more tired or have the house be a bit less picked up--then so be it. I will take Ezra to school and I will pick him up and I will be with Iris whenever I can between those two times. One of us will always be home with Ezra. We will all be home to sleep.
So when T and I sat down to plan our next two weeks, it was ridiculous. I cried from the overwhelmingness of it all. I've written down a blow-by-blow of where the four of us will be up until the 20th--that way no one gets lost in the shuffle. It looks a lot like this: Me on drop off, me working in town, T in Plymouth for 9-10am mtg., T at U of M from Noon-4pm, me on pick-up, T home by bedtime. I'm old school and use a paper calendar; T is new school and uses his AfricanAmericanBerry.
In the meantime, I'm trying to get crackin' on thank you gifts for Iris' primary nurses (two daytime, two nighttime) and treats for the NICU staff as a whole and thank you cards for a bunch of other people who have helped us. Talking to one of Iris' nurses the other night, I totally cried. Sure, I'm Iris' mother--but these nurses have been the ones who kept her alive and I'm not sure how to really share how much that has meant to T and I. Not sure some pie and a gift card to Pottery Barn really conveys it, but I hope it expresses our gratitude a little.
And since this weekend will be the last weekend with Iris here in town before being scooted two hours away for her surgery. We're going to be heavy on the photo-taking so that when she's looking run through the ringer after surgery, I can remember her little face and crazy hair.
And holla if it isn't also going to be nice outside. It should be a good weekend.
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